approach to translating evidence to care for cancer survivors · the survivorship care roundtable:...

Integrating Agendas: A “Team Sports” Approach to Translating Evidence to Care for

Cancer Survivors

Catherine M. Alfano, PhDVice President, Survivorship

SBM Master Lecture April 2, 2016

Estimated and projected number of cancer survivors in the United

States from 1977-2022 by years since diagnosis

0

2

4

6

8

10

12

14

16

18

20

1977 1982 1987 1992 1997 2002 2007 2012 2017 2022

Nu

mb

er i

n M

illi

on

s

Year

15+ years

10-<15 years

5-<10 years

1-<5 years

<1

de Moor et al, CEBP, 2013;22(4):561-70

Cancer Survivorship Research &

Reports

Cancer Survivors are at risk:

Chronic & Late Effects of Cancer

FatiguePain

LymphedemaSexual

Impairment

Incontinence

Depression, Anxiety

Uncertainty

Poor body image

Relationship changes

Job & Insurance problems

Financial burden

CVD

Recurrence/new cancers

Endocrine dysregulation

Obesity

Diabetes

Osteoporosis

Functional limitations

Disability

Poor Quality of Life

Neuropathy

+ Changes: purpose, priorities

Oeffinger et al, N Engl J Med, 2006

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1.0

0 5 10 15 20 25 30

Yrs. From Original Cancer Diagnosis

Cu

mu

lative

In

cid

en

ce Grade 1-5

Grade 3-5

Incidence of Chronic Health Conditions in 10,397

Adult Survivors of Childhood Cancer

Mean age of 26.6 years (18-48 years)

By 30 years post cancer:

• 73% survivors with at least one

chronic health condition

• 42% with a Grade 3-5 (severe,

life-threatening, death)

• 39% had >2 chronic health

conditions

Survivors – 8.2 times more likely to

have a severe or life threatening

condition compared to siblings

Childhood Cancer Survivor Study

% with Limitations:

Survivors vs. General Population

Hewitt, Rowland, Yancik. J Gerontol. 58:82, 2003

Psych

Problems

1+

ADL/IADL

1+

Functional

Work

Group Statistics Mask Individual

Differences

Vs…

Projected Increase in US Cancer

Survivors by 2020

Parry et al, CEBP; 20(10) October 2011

0

2,000,000

4,000,000

6,000,000

8,000,000

10,000,000

12,000,000

14,000,000

16,000,000

18,000,000

20,000,000

2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020

Nu

mb

er

of

ca

se

s

Year

65+

<65

42% ↑

Baby Boomers & Expectations:

What a Difference a Generation Makes

THEN COMING SOON…

Old vs. New Definitions ofQuality of Life

Delivering Survivorship Care

• Who should be responsible for survivorship

care?

Oeffinger & McCabe, JCO 2006

Delivering Survivorship Care –Patient

Preferences

Hudson et al, Ann Fam Med 2012

• 52% survivors want follow-up care from cancer specialist

• Survivor concerns about PCPs:

• Lack of cancer expertise• Lack of involvement w

original cancer care• Lack of care continuity

Delivering Survivorship Care

• Who should be

responsible for

survivorship care?

• Divergent perceptions

about who should

provide care for

survivors

Erikson et al., 2007, JOP

Potosky et al, JGIM 2011

Projected Shortage of Oncologists

Delivering Survivorship Care

• Knowledge gaps among PCPs (& oncologists)

Potosky et al, JGIM 2011

Costs of Cancer Care (US)

• $157.77 billion by 2020

• Survivorship excess medical costs: $25-48

billion

• Lost productivity among survivors: $8-16

billion

Costs of Cancer Care (Survivors)

Survivors 2.65 X more likely to file bankruptcyRamsey, Medical Affairs, 2013

Bankruptcy among survivors: 1.79 X higher risk of mortalityRamsey, JCO, 2016

Yabroff, JCO, 2016

Effective, Efficient Care

Doing the right things

Doing the right things right

Doing things

Doing things right

High EfficiencyLow Efficiency

Low Effectiveness

High EffectivenessEfficiency: Doing things rightEffectiveness: Doing the right things

What Does “Doing the Right Things

Right” Look Like for Survivors?

• “Whole person” survivorship care focused on

creating healthy survivors

• Goal: Develop efficient pathways of care

– Keep people OUT of the healthcare system as much

as possible

– Intensity of care varies with need

– Prevent long-term problems to lighten load in primary

care

– Engage patients; Leverage technology

• Coordinate care

• Increase the VALUE of care (outcomes vs. cost)

IOM 4 Pillars of Survivorship Care

• Surveillance

– Recurrence, 2nd cancers, late effects

• Intervention for treatment consequences

– Medical/psychosocial/economic

• Prevention of recurrence/new CAs, late

effects, new comorbidities, disability

• Coordination between PCP, ONC, and

specialists to ensure all needs are met

• For comprehensive, patient-centered care

Screening, surveillance for new/recurrent cancers

Management of late/ long-term effects

Psychosocial, Rehabilitation, & Palliative Care

Specialist care (Cardiac, Endo, Ortho)

Prevention, lifestyle recommendations

Coordination of carePatient

&Family

Hematologist/Oncologist

ONC Nurse

Cancer Rehabilitation Team

Palliative Care Team

Psychologist/Psychiatrist

Social Worker

Pharmacist

Primary Care MD, PA, APRN

Dentist

Specialty providers (CV, Endo, Ortho)

Clinical Care Follow-up Guidelines

• Prostate Cancer – Published online in CA Cancer J Clin on June 10, 2014.(www.bit.ly/ACSPrCa)

• Colorectal Cancer – Published online in CA Cancer J Clin on September 8, 2015. (bit.ly/acscolorc)

• Breast Cancer – Collaboratively developed and released with ASCO. Published online in CA Cancer J Clin and JCO on December 7, 2015. (bit.ly/BrCaCare)

• Head and Neck Cancer – Published online in CA Cancer J Clin March 22, 2016. (bit.ly/acsheadneck)

• Insufficient data to develop guidelines for other cancer sites at this time

Clinical Care Follow-up Guidelines

Guidelines are Useless if We Cannot

Deliver Guideline-Consistent Care

Next Step:

How Do We DELIVER High-Quality

Survivorship Care?

How Do We Get to the Future?

Need Multi-modal, “Team Sport” Partnership Approach

Policy Makers

Clinical Educators

Healthcare Payers

Clinicians

Survivors & Families

Public Health, Community partners

Healthcare Administrators

Industry

ResearchersAdvocacy

Health IT, EHR vendors

Employers

“Team Sport” Strategies to Improve Survivorship Care

Individualized Care Pathways

Legislative/Regulatory/Policy

Technology, Digital health, EHR innovation

Assessment, triage, & surveillance

Healthcare Delivery Innovation

Patient activation/empowerment

Provider Training

1. Assessment, triage, and surveillance• “Precision medicine” Comprehensive Assessment of

Needs & Resources: Integrate molecular, genomic, cellular, physiological, clinical (w PROs), behavioral, and environmental data

• Risk-stratify into care pathways

•Modeling: supercomputer, systems science

• Repeat Assessments: Ongoing surveillance for survivors’ needs

WHO?

2. Create individualized care pathways:

• Targeted: Identify what works for whom? Type & Dose? Especially older adults

• Feasible interventions (survivors & system)

• Assess outcomes: morbidity, referrals, costs, mortality; outcomes that matter to survivors

• Change the process of conducting research—improving communication, collaboration, evaluation, and feedback through partnerships w ALL stakeholders

WHO?: All

Creating Better Research through Partnerships

T3

T1

T2

T4

T0Technology

Multi-level

Analysis

Collaboration (Researchers,

Survivors, Clinicians,

Stakeholders)

The Translational Science Process for Survivorship

Modified from Lam et al; CEBP 2013; (22); 181-8

Survivor Population Health &

Disease Burden

Scientific Discovery

Promising Applications &Interventions

Evidence BasedRecommendations ,

Guidelinesor Policies

Programs in Practice,Organization, &

Community Settings

Describe

health outcomes& determinants

Mechanisms; Preclinical Studies;

Phase I & II trials

Evaluation of Interventions

(Phase III Trials)

Implementation &

Dissemination in real-world settings

Evaluating outcomes inreal-world settings

Knowledge

Integration

Change our Thinking about “Outcomes” to Translate Science into Care• Differ with intended audience

• Providers: morbidity, mortality, referrals, clinic flow

• Survivors: morbidity, mortality, feasibility, out of pocket costs

• Payers: outcomes, costs, ROI

• Legislators & Regulators: new care model value & off-sets

Collect Data to inform USPSTF*:• Intervention effects by symptoms, comorbidities

• Feasibility of referral from primary care

• Dose response for different outcomes

• Independent contribution of intervention components

• Adverse events/potential harms

• Use standardized measures to facilitate pooling

• Intervention effects on health outcomes, prognosis, intermediate markers

*Murray DM, Kaplan RM, Ngo-Metzger Q, et al. Enhancing Coordination Among the USPSTF, the AHRQ, and the NIH. American Journal of Preventive Medicine, 2015, Sept; 49 (3 Suppl 2), S166-73

*These same data will help make the case to other funders as well

3. Patient Activation & Empowerment

• Help survivors self-manage health, become active participants in care = ↑ care efficiency, ↑ adherence, better outcomes

• mHEALTH tools, education, communication & decision making aids

• Workplace solutions

WHO?

4. Provider Training

• Medical school education in survivorship (oncology, primary care, nursing, pharmacy)

• Hybrid practitioners (cardioncology, cancer rehabilitation, palliative care)

• Continuing education for existing workforce

WHO?

E-Learning Series for Primary Care Providers

www.cancersurvivorshipcentereducation.org

ASCO/Primary Care Training

5. Healthcare Delivery Innovation

• Interventions: meet the IHI triple aim

• Improve referral, care coordination, & communication

• Develop tech, mHEALTH, EHR tools to facilitate guideline-consistent care delivery

WHO?

6. Legislative, Regulatory, Policy Reform

• Legislative: Reform insurance coverage:

• Care coordination

• Care planning

• Survivorship care interventions

• Regulatory: Reform carrots & sticks

• CoC, ASCO QOPI

• Revise CMS Oncology Care Model (bundle) to optimize survivorship

WHO?

6. Legislative, Regulatory, Policy Reform

WHO?

Policy

Need Multi-modal, “Team Sport” Partnership Approach

How do we get everyone together?

Policy Makers

Clinical Educators

Healthcare Payers

Clinicians

Survivors & Families

Public Health, Community partners

Healthcare Administrators

Industry

ResearchersAdvocacy

Health IT, EHR vendors

Employers

New National Initiative to Serve as “Coach”:

ACS & ASCO are founding:

The Survivorship Care Roundtable: •Bring together organizations with a stake in the care of cancer survivors

• Clinical groups, advocacy, industry, lifestyle change, payers, regulators, policy makers

•Overarching goal: enhancing delivery of survivorship care to meet survivors’ needs and keep them active and functional •Tackle agendas that no one organization can do alone

The Survivorship Care Roundtable: Subgroups will tackle each of these collaborative agendas:• Assessment, triage, & surveillance• Individualized Care Pathways• Patient activation and empowerment• Provider training• Healthcare delivery innovation• Legislative, regulatory, policy reform

*All leveraging changing technology

New National Initiative to Serve as “Coach”:

Understand Their Specific Motivators, Realities of their Business Model

• What will they get out of participation?

• ROI?

• Value added?

• Drivers are Different…

Engaging Stakeholders

Stakeholder …is motivated by:• Manuscripts, Grant funding

Tenure & Promotion

• Healing as many patients as possible; Easy clinic flow

• Meeting customer needs to drive market share & revenue

• Making voices count, driving patient-centered care

• Pleasing constituents, getting re-elected

Match the Motivators

Stakeholder …is motivated by:• Manuscripts, Grant funding

Tenure & Promotion

• Healing as many patients as possible; Easy clinic flow

• Meeting customer needs to drive market share & revenue

• Making voices count, driving patient-centered care

• Pleasing constituents, getting re-elected

Match the Motivators

Stakeholder …is motivated by:• Manuscripts, Grant funding

Tenure & Promotion

• Healing as many patients as possible; Easy clinic flow

• Meeting customer needs to drive market share & revenue

• Making voices count, driving patient-centered care

• Pleasing constituents, getting re-elected

Match the Motivators

Stakeholder …is motivated by:• Manuscripts, Grant funding

Tenure & Promotion

• Healing as many patients as possible; Easy clinic flow

• Meeting customer needs to drive market share & revenue

• Making voices count, driving patient-centered care

• Pleasing constituents, getting re-elected

Match the Motivators

Stakeholder …is motivated by:• Manuscripts, Grant funding

Tenure & Promotion

• Healing as many patients as possible; Easy clinic flow

• Meeting customer needs to drive market share & revenue

• Making voices count, driving patient-centered care

• Pleasing constituents, getting re-elected

Match the Motivators

Stakeholder …is motivated by:• Manuscripts, Grant funding

Tenure & Promotion

• Healing as many patients as possible; Easy clinic flow

• Meeting customer needs to drive market share & revenue

• Making voices count, driving patient-centered care

• Pleasing constituents, getting re-elected

Match the Motivators

A Challenge Lies Before Us…

THANK yOU,

DEB BOWEN

!!!!!!!

2016 SBM Distinguished Research Mentor Awardee

54

CATHER INE. ALFANO@CANCER .ORG

THANK YOU !

CANCER.ORG 800-227-2345